TURN­ING PAIN INTO GRACE

SHARON MALONE’S ICE BUCKET CHAL­LENGE

Sunday Independent (Ireland) - Life - - FRONT PAGE -

T he sig­nif­i­cance of the act of reach­ing out to another hu­man and of­fer­ing support can be life-al­ter­ing at the most. And a pro­foundly felt act of ca­ma­raderie at the least.

The day I met Sharon Malone in­volved one of those acts.

Fol­low­ing a tough few years, cul­mi­nat­ing in the har­row­ing ex­pe­ri­ence of see­ing my son come close to dy­ing, I had, I thought, come out the other side. To cel­e­brate feel­ing re­lief that life was get­ting good again, I planned a treat — a trip to Brown Thomas for some fab­u­lous new clothes, with the as­sis­tance of one of their per­sonal shop­pers, Sharon Malone.

An hour later I was in tears in an el­e­gant dress­ing room. Not be­cause of Sharon. Be­cause I couldn’t find any­thing that fit me. Sharon, who had been, up to this point, the con­sum­mate pro­fes­sional Brown Thomas staff mem­ber, recog­nised my dis­tress, threw off the slick store man­ner and said, “Hold on, now, don’t be los­ing hope. I’ ll find you some­thing, don’t you worry.” Then she dashed off.

For­get­ting com­mis­sion and ev­ery­thing else a prac­ti­cal sin­gle mum like her should have done, Sharon went to Phase Eight, one of the cheap­est la­bels in Brown Thomas. There she found me two stun­ning out­fits for the price of one leg of a Stella McCart­ney pair of trousers. To this day, those two out­fits are among my favourites. As all women will agree, a sales­per­son who makes us feel good about our body in clothes wins de­vo­tion.

That was the day I re­ally met Sharon Malone. Since then, we have got to know each other, though she left Brown Thomas a year later. We are both sin­gle mums, into health and fit­ness, mind­ful­ness and al­ter­na­tive liv­ing. We had both worked in the film business. We had lived in and loved New York and worked in fash­ion. We en­joy our chats and laughs, talk­ing of men, med­i­ta­tion and our sons.

Sharon is a ‘ searcher’, by which I mean she has spent her life search­ing for an­swers — and so­lu­tions — as to the mean­ing of life and how to live a qual­ity life.

Ter­ri­bly, this stun­ning, fortysome­thing woman was struck down last Oc­to­ber 16, when she was told that the tin­gling she’d been ex­pe­ri­enc­ing in one leg, which had now spread to the other leg, was amy­otrophic lat­eral sclero­sis (ALS), or mo­tor neu­rone dis­ease (MND), also known as Lou Gehrig’s dis­ease.

“I think I got ill from stress,” Sharon told me. “I date it all from a year and half be­fore the di­ag­no­sis. I was do­ing a Bikram yoga 30-day chal­lenge. On day 28, I had a bad fall. After, I had a limp. A year on, the limp hadn’t gone away.

“I started go­ing to the gym ev­ery day. I went on a high-pro­tein diet, the Pa­leo diet, which, I think now, didn’t help.”

Sharon’s now 17-year-old, son, Timmy, in­sisted there was some­thing wrong.

“I started get­ting twitches in my feet,” Sharon says. “Then I started get­ting twitches on the other leg. That was the scary part. I went to all the top spe­cial­ists. No­body thought it was ALS. I was told it was a trapped nerve. I was told lots of things. ALS is very hard to di­ag­nose. There is no test. They have to do two weeks of as­sess­ments. Even­tu­ally, I was di­ag­nosed in Beau­mont.

“Oc­to­ber 16 th,” Sharon re­calls. “I’ ll never for­get. I didn’t be­lieve it. I started laugh­ing. I had been very happy. I thought it was stress. Maybe I was in de­nial. But when I was told, I thought, ‘I’ ll beat this’.”

The day after her di­ag­no­sis, the hos­pi­tal out­lined to Sharon her fu­ture: the ramps, wheel­chairs and hoists she was go­ing to need to get fit­ted in her house. At this stage, Sharon was still ac­tive and seem­ingly well, work­ing, tak­ing care of her son, ex­er­cis­ing, driv­ing. She’d barely taken in the di­ag­no­sis. The sce­nario the hos­pi­tal was out­lin­ing, true as it was, felt like a death blow.

“We all re­act dif­fer­ently,” she says. “Some peo­ple tell you that you need to ac­cept it, live your life, plan what you are go­ing to do for the next few years. I tried think­ing along those lines. But I can’t do that.

“I be­lieve in mir­a­cles and in pos­i­tive think­ing. Be­ing di­ag­nosed with this is life chang­ing, as you can imag­ine. But you have to get on with it and find a way through,” she con­cludes.

Sharon, as most peo­ple might, hit the in­ter­net to re­search her con­di­tion. There she suc­ceeded in terrifying her­self more than the doc­tors had.

“I was search­ing for a so­lu­tion, a mir­a­cle,” she says. “Peo­ple who got bet­ter from this. I didn’t find any. But I found the Hip­pocrates Health In­sti­tute.”

The Hip­pocrates Health In­sti­tute, in Florida, has been in ex­is­tence for over 60 years. Like east­ern health sys­tems such as Chi­nese medicine and Ayurveda — the 5,000-year-old In­dian health sys­tem — at Hip­pocrates they be­lieve that emo­tions and the food you eat, play a big part in cre­at­ing ill­nesses, and pos­si­bly cures. The Hip­pocrates web­site states: “Let food be thy medicine, and medicine be thy food.” For Sharon, who is self-aware and stud­ies nu­tri­tion, it was a life­line.

“I fled to it,” she states, boldly. “I have had a very in­ter­est­ing jour­ney and I have very clear ideas about sick­ness. Hip­pocrates and the ve­gan diet, the treat­ments, and Dr Brian Cle­ment [a di­rec­tor in the in­sti­tute] es­pe­cially, have been a great in­spi­ra­tion to me.”

Sharon found hope, a pos­i­tive fo­cal point rather than the neg­a­tive fu­ture she felt was wait­ing for her at home.

“They have a life-chang­ing pro­gramme there. It takes three weeks. There’s no salt, it’s all vegetables, green juices, clean wa­ter. You go to bed early. You are on 50 acres of jun­gle, free of pes­ti­cides. It’s a clean en­vi­ron­ment.

“It was very tir­ing but I never felt bet­ter in all my life,” Sharon adds. “It was a big emo­tional change, too, be­cause you are clean­ing out your kid­neys and liver and your emo­tions, ev­ery­thing.”

In the United States, many doc­tors are look­ing at the Amer­i­can diet of wheat, meat and fatty, sug­ary, salty, pro­cessed food, as be­ing sig­nif­i­cant fac­tors in a lot of chronic ill­nesses. De­lib­er­ate flouridation

of wa­ter ceased there many years ago due to health con­cerns. Ir­ish wa­ter has some of the world’s high­est lev­els of statein­tro­duced flu­o­ride.

Ve­g­an­ism is also on the rise in Amer­ica. And what starts in Amer­ica in­evitably ends up here.

“The weird thing was that six months to a year be­fore I got the di­ag­no­sis, I was start­ing to feel pos­i­tive,” Sharon tells me. “I was find­ing my way. I asked Brian Cle­ment why it struck then. He said that if you were emotionally stressed for years, your sys­tem goes way down due to shock and emo­tional stuff. It can’t fight viruses, which could be the cause of this.”

Sharon did the three-week Hip­pocrates pro­gramme, be­fore re­turn­ing home to Dublin from Palm Beach. “I came home for Christ­mas and I couldn’t see a way [to get bet­ter] here. So I went back. After a few weeks, I went off the diet. I couldn’t stay on it. I was go­ing to Dunkin’ Donuts and started eat­ing burg­ers again.

“Break­ing the diet made me men­tally worse. Be­ing on it made me feel cleaner. After a month or two I tried to go back on it. I am more into it now. I do four juices a day — 50pc sun­flower sprouts, 50pc green veg. My body shape went back to what it was — curves in all the right places, with­out ex­er­cise. I feel great on it, very pos­i­tive. My mind is very clear. I wish I had dis­cov­ered it sooner.”

Sharon stayed in Florida for sev­eral more months be­cause it felt hope­ful and the warm cli­mate made it eas­ier to move. She tried stem-cell ther­apy, but it failed. In June, as her body’s abil­ity de­te­ri­o­rated, she re­turned home.

The dash­ing, al­ways ac­tive, ad­ven­tur­ous Sharon I knew, is now im­mo­bile. She can move one arm, with which she can hold a cup and drink via a straw. Some­one has to feed her. Hoists are used to get her in and out of bed, to help get her to the toi­let, to get her dressed or into a chair. She has a wheel­chair, but after a while it hurts her and af­fects her breath­ing. Her speech is low, and at times halt­ing, as ALS af­fects all the body’s abil­i­ties. She re­quires 24-hour care.

Yet, I can at­test that Sharon has never looked nor sounded bet­ter. She at­tributes that to fol­low­ing the ve­gan diet and what she learnt in Hip­pocrates from Brian Cle­ment. Sharon desperately doesn’t want to end up in a nurs­ing home. Be­cause there — and this is my opin­ion — she will have to ac­cede to the med­i­cal at­ti­tude that says there is only one way this ill­ness will end. The State pays for 31 hours of care per week. There are 164 hours in a week. While she is at home, she still has a sem­blance of her own way of life; her fam­ily are ded­i­cated, ca­sual and up­beat, tak­ing their cue from Sharon.

Her fa­ther, Tim Malone, a for­mer Aer Lin­gus en­gi­neer, has been sup­port­ing her and comes ev­ery day to visit. As does her lovely Aun­tie Rita and her sis­ter, Ni­cola, who brings her lit­tle boy, Harry. Trevor, Timmy’s dad, helps out, too. On the two days I vis­ited, Sharon’s home was con­stantly bustling with life and buzz. Her car­ers are bril­liant, up­beat, sup­port­ive women. It’s Sharon’s love field.

“Every­body has been so kind, very giv­ing. I am very happy.” Sharon told me, and I be­lieve her. Such a life could not be pos­si­ble in a nurs­ing home, with a fixed rou­tine and vis­it­ing hours.

Timmy, Sharon’s son, splits his time be­tween his home with her and his dad’s. “When I was di­ag­nosed, they told me: ‘You have to tell your fam­ily. You have to tell your son.’ I didn’t want to tell Timmy. But after about a month I ended up telling him. He had been play­ing guess­ing games with me for over a year be­fore.”

Timmy is as valiant as Sharon. Now in his Leav­ing Cert year, on the day of our shoot he came home early from school to be with his mum while we were do­ing our pic­tures. The story was that he was there to get his pic­ture taken with her, but re­ally he was there to make sure that Sharon was OK.

While with us, he lifted his mum when she asked and when she said, “I need some­one to make me smile,” he just looked at her and she cracked up laugh­ing.

There is an in­cred­i­ble bond be­tween the two. So much knowl­edge — war and love, an­noy­ance and laugh­ter, pride and plea­sure. He’s Sharon’s hero. Timmy is a war­rior. Like his mum.

Be­ing with Sharon, see­ing how she is liv­ing, made me ap­pre­ci­ate all the more Sharon’s de­sire to stay liv­ing in her own home. I saw the vi­tal role that car­ers, friends and fam­ily make in her life: the con­stant need for some­one to be present, to move a limb that has slipped un­com­fort­ably, be­cause, with ALS, even though mus­cle func­tion is gone, pain is still present; some­one to pull your top down be­cause it has rid­den up your back and is hurt­ing you; some­one to feed you, take care of you. Sharon is choos­ing to be­lieve in mir­a­cles. Liv­ing at home is that mir­a­cle.

Her friends, as peo­ple of­ten do, have come to­gether and or­gan­ised a tremen­dous fund-raiser bash. All pro­ceeds will be used for Sharon’s care and for main­tain­ing her qual­ity of life. This is her de­sired mir­a­cle.

The event, A Night for Sharon, will be held on Thurs­day, 9 Oc­to­ber, in the Sugar Club, Dublin. Ray D’Arcy will be master of cer­e­monies and The Stun­ning, The Usual Sus­pects and Jessie Hef­fer­nan are among the acts donat­ing their time to the cause. Tick­ets are through the Sugar Club web­site, priced at €30 and do­na­tions can be made through the club’s Face­book page. It prom­ises to be a great night.

The late Colm Mur­ray, who was di­ag­nosed with ALS/MND, made a cel­e­brated doc­u­men­tary chart­ing his ill­ness. MND — The Inside Track was broad­cast on RTE last year. In it, Colm out­lined his at­ti­tude to his con­di­tion: you have two choices — give in to it, or make some­thing of it. He chose the lat­ter and of­fered him­self to re­search projects and high­lighted the con­di­tion through mak­ing pub­lic his own ex­pe­ri­ence.

Sharon Malone, too, is choos­ing to make some­thing pos­i­tive of her sit­u­a­tion by seek­ing the pos­i­tive. She feels that there is a lot of neg­a­tiv­ity in Ire­land with re­gards to ill­ness, prog­noses, and other op­tions of treat­ment.

Brian Cle­ment, the Hip­pocrates In­sti­tute, and the al­ka­line diet, helped her shake off the power-rob­bing na­ture of her con­di­tion, en­abling her to feel bet­ter, stronger, hope­ful — pow­er­ful — again.

“You re­alise what is re­ally im­por­tant in life. Like,” Sharon says with a laugh, “if I had a sec­ond chance, I would lose all my in­hi­bi­tions.” What in­hi­bi­tions? I en­quire.

“The silly stuff,” she an­swers. “That my arse is too big, that kind of thing. Like, you know, you don’t ap­pre­ci­ate your health when you have it.

“I used to see peo­ple in a wheel­chair and I would be dev­as­tated for them. But it is not so bad when you are in it. Life goes on. I have a very full life. I am able to en­joy peo­ple.”

I have seen peo­ple brought low and ut­terly re­duced by ill­ness and I have see peo­ple emerge, phoenix-like, from the ashes, the em­bod­i­ment of life tri­umphant, love and grace. Sharon Malone and her son, Timmy, are such peo­ple.

“Any­thing pos­i­tive should be the fo­cal point,” Sharon says. “In clin­ics, when bring­ing peo­ple in, pos­i­tive re­in­force­ment, any pos­i­tive re­in­force­ment, is needed in this re­cov­ery. Belief is what we need. We need to be­lieve in get­ting bet­ter. We need belief in some­thing.

“Hope is hope.”

‘I didn’t want to tell Timmy. But after about a month I ended up telling him’ — Sharon with her

son, Timmy.

‘I used to see peo­ple in a wheel­chair and I would be dev­as­tated for them’

— Sharon at her home in Dublin

‘Be­ing on the diet made me feel cleaner’ — Sharon, with her friend, Luz Gal­lego, at the Hip­pocrates In­sti­tute, Florida, in Jan­uary

‘ Life goes on. I have a very full life. I am able to en­joy peo­ple’ — Sharon on her

life at the mo­ment

‘Every­body has been so kind, very giv­ing. I am very happy’ — Sharon’s pos­i­tive at­ti­tude re­mains de­spite her de­bil­i­tat­ing

con­di­tion

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